When Lisa Johnson was on her honeymoon, she was not feeling all romantic butterflies — there was blood in her stool and pain in her abdomen.
With Lisa being a recent graduate from WVU, at age 26, she did not have medical insurance. She saw her primary care doctor, who wrote her symptoms off as diverticulitis, which is an inflammation or infection in the digestive tract.
She then took advantage of going to a free women’s health clinic in Fairmont.
Lisa initially thought her symptoms were internal hemorrhoids because she has been a dancer her whole life, and it is common with dancers.
She told the doctor of her symptoms, but was told it had just been constipation.
Lisa began taking stool softeners as recommended by the doctor, but the symptoms did not stop.
After a stabbing pain in her right butt cheek, she made another appointment immediately.
Lisa finally saw Dr. Burns, a surgeon in Morgantown, and it did not take long for him to feel the mass where the sharp pain was occurring. Three days after her appointment, she had her first colonoscopy and biopsy of the mass.
Still without insurance at the time, Lisa applied for Medicaid. She was denied.
When the biopsy results came back, it confirmed she had Stage IIIB Rectal Cancer; a 7cm tumor festering insider of her.
She reapplied for Medicaid. She was approved.
Lisa was officially diagnosed on April 28, 2010, and was told her survival rate was 10 percent.
Lisa then had a total of five 5FU chemotherapy sessions and pelvic radiation for six weeks.
The doctor’s goal with the procedure was to shrink the tumor before surgery, but the tumor was resistant to the 5FU.
It had only changed the shape of the tumor, resulting it growing towards her vagina.
Her first surgery was Aug. 19, 2010, at Fairmont Regional Medical Center. It involved the removal of the 7 cm tumor in her rectum, lymph node removal, vaginal wall scraping and a colostomy to be permanently attached to her lower left abdomen.
When Lisa woke up from surgery and noticed the bag stuck to her side, she kept herself composed with the doctor in the room.
Once the doctor stepped out, she looked at her husband, Chad.
All she needed was a timer set on his phone and requested he leave. She had 20 minutes — 1,200 seconds to mourn her body.
She cried, kicked, screamed, cursed, and when the timer was up, she was fine.
“It’s very daunting for someone in their 20s or 30s to have a bag attached to your stomach for the rest of your life,” she said.
With time, Lisa came to realize a colostomy can save lives, and it helped save hers. She became at peace with her bag and named it Stella.
Lisa talked with her surgeon after her first surgery, and decided to move to the WVU Cancer Institute.
There, she started six weeks of FOLFOX, a chemotherapy regimen for colon cancer, every two weeks. Each visit, she spent 11 hours getting infusions.
After those six weeks, she had one clean scan in February 2011. It was a short remission because that July, her PET Scan revealed a 1.2 cm tumor in the same area as her first tumor.
Two months passed and for the next procedure, she was referred to a colorectal specialist at UPMC, Dr. Celebreeze, for the removal of her second tumor. The surgery took place September 2011, and not only involved the removal of the tumor but a tailbone removal, complete hysterectomy and a complete vaginectomy.
After that surgery, she was onto another chemotherapy. It was her final chemotherapy, which was six months of three Xeloda pills in the morning and three in the evening.
Since June 6, 2012, she has been cancer free, showing no evidence of disease (NED).
Lisa said all of the appointments with doctors and chemotherapy sessions she had were easy, but what she could not imagine was being in Chad’s shoes.
“I became an excellent, professional cancer patient,” she said. “[My husband] having to watch it all … I cannot imagine. I think that’s the harder of the two jobs for sure.”
After being declared NED, Lisa started to search for other survivors, first on Facebook. Soon after, she was involved in several organizations, including the Colon Club. She was one of the nine 2019 survivors in the Colon Club’s On the Rise magazine.
“We came together as nine strangers, and in five days and four nights we left as a family. You find your tribe,” Lisa said. “Once you find your people, you wonder how you survived without them.”
There is no causal link to colorectal cancer in young adults, which is why Lisa has been more inclined to advocate for it. She recently went to Washington, D.C., with over 200 advocates to ask West Virginia officials to support the 2020 Labor, Health, & Human Services appropriations bill.
The bill urges the National Cancer Institute to research why the incidence rate of colorectal cancer is increasing in the early-age population.
Looking back on her journey, Lisa said all of the symptoms for her cancer were there, but nowhere to be found was a doctor who would take her pain seriously. When she joined the Colon Club, she realized although each story of her peers was unique, there was one common theme: misdiagnosis.
Johnson said the friends she has met through her various groups for colon cancer awareness had been written off at least twice, resulting in later-stage diagnoses.
“It’s hard to get a diagnosis,” she said. “I think, as a young adult because we always seem to have the same story … you’ve seen one or two, sometimes three doctors that write you off, they don’t take you serious and you have to essentially fight to get a colonoscopy or get a doctor that believes you.”
Lisa’s important message she has learned is to “listen to your body.” She encourages young adults to get screened because cancer does not consider age.
“Just like any cancer, it doesn’t discriminate with age,” she said. “It doesn’t care how old you are, it doesn’t care where you are at in your life, it doesn’t matter.”
